University-based or community-driven? On community and research
John P. Egan,
University of British Columbia, Canada
Introduction
There is an ascendant discourse in academe about the value of community-based research, or CBR (Minkler & Wallerstein, 2002; Strand et al, 2003). There are recent examples of CBR in scholarly literature (Adams, 2007; Fowles, 2007); in adult education CBR, along with other participatory methods, has been held in high regard for years (Hall, 1975; Winkelmann, 1997; Saquinetti, Waterhouse & Maunders, 2005). There is also an expanding literature that shows how training acquired through post-graduate study in adult education increasingly informs the practice – if not study design – of researchers in other disciplines (Dowsett et al, 2001; Wagner, Jenkins & Smith, 2006; Sessions Hagen, 2005). These developments represent a genuine shift in the research. Increasingly CBR has become a buzz word – a discursive requirement, one could argue – amongst university-based researchers. Today research funding bodies more consistently requiring academics who conduct human “subjects” research to demonstrate how they will bring community voices into the research process. Agencies, like the Canadian Institutes for Health Research (CIHR, 2007) have allocated specific monies for CBR, including an explicit requirement that at least one primary investigator be community positioned, usually an activist from a non-governmental organization (NGO).
And yet CBR apparently cannot be wholly entrusted to community once it receives money from such agencies. CBR operating grant competitions favour teams with at least one university-based researcher as a primary or co-investigator. In fact, these grants are usually adjudicated by committees with more university-based researchers than activists. When the associated funds are held at a university (rather than an NGO) these “community-based” studies must first conform to the university’s administrative requirements – even if said requirements conflict with community priorities and norms. Thus the university continues to often hold the financial and administrative research reins, even in CBR. And community-based researchers who seek (and receive) monies from these sources are often subject to the normative practices of the university-based research (UBR) enterprise—an enterprise known for its problematic practices with respect to community.
In today’s academy there seems to be a reflexive assent to CBR principles whenever they are espoused; after all, what university-based researcher today would speak against community empowerment? As a result a discoursepraising theidea of CBR is today prominent, whereas UBR practice fails to integrate CBR ideals. In some such instances, UBR is actually rebrandedas, instead of being adapted to, CBRprinciples.
Adult educationalists
Many of us are positioned in adult educational sites within the university, where principles such as community Ownership, Control, Access, and Possession (OCAP) are the norm (Barlow, 2006). These are not reflected in the principles of the traditional UBR enterprise. Its principles tend to maximise the production of things the university values, namely research money and peer-reviewed publications. “Efficiency”, “staying on schedule” and “avoiding complications” tend to drive the UBR enterprise much more than consideration of the research’s (and researcher’s) impact, with respect to both process and outcomes, on community.
During more than two decades of grassroots activism (including CBR) and a decade conducting UBR – in epidemiology, adult education, and health services – I have seen a broad spectrum of community experiences with respect to research. These have included highly successful and highly problematic studies (most fell somewhere in-between). In the last decade activists have become increasingly savvy with respect to the importance of research in creating change. Many irritated activists, myself included, responded to the “show us your evidence” refrain from public officials by returning to university for research training. Resultingly, many of today’s activists possess strong research skills: understanding the powerful influence of research, quite naturally has given them a desire to wrest the research enterprise away from universities.
This paper examines community-university-research relations. Many conflate all manifestations of community-university research relations with CBR, which is a mistake: a much broader range of community-university research approaches exist. Several of these, initiated and delivered by academics, activists, or both, are identified and discussed. An assessment of what sort of university and community research collaborations might be appropriate is offered, based on a community’s research needs and capacity, also taking into account some of the requirements of collaborating academics. In particular the following questions are examined:
- What are some of the approaches found on the community-university research continuum?
- What are some of the attributes of each?
- How can activists select an approach appropriate for their interests, aspirations, and capacities?
Largely this paper is a reflection on practice…my practice, as both an activist and a researcher. While my primary role is currently at a university, I remain an activist, much of whose activism currently takes the form of CBR. In using my own experience to explicate the different approaches I am not asserting that my decisions – particularly to position myself within the academy – are appropriate for everyone.
A research legacy
Ideally, any community that needs reliable, relevant research could have it on demand. In the real world, most communities’ research capacity – its ability to consume, critique, design and deliver reliable research – varies. Some communities are imbued with a wealth of research capacity; unsurprisingly these communities interests are often already well represented in the mainstream of UBR. How else might we make sense of the development of several pills for erectile dysfunction, when scant attention (or money) is paid to develop treatments for malaria or cervical cancers? So I do want to be clear: my discussion here is oriented towards communities disconnected from and badly served by UBR.
In communities facing challenges like disease, poverty, malnutrition, or violence, day-to-day survival saps up most time and energy, leaving little for things like research. Unfortunately such communities have often been the focus of researchers looking for problems to study rather than communities to help. It is not a coincidence that indigenous peoples are particularly dubious of research: all too often UBR has pathologised indigenous communities as sub-human disease vectors or failed families (Tuhiwai Smith, 1999; Marker, 2004; Fiske & Browne, 2006). In general many outsider communities, those who experience stigmatization, marginalization or social exclusion, are often hostile to the very idea of research.
Thus, amongst communities there is a range of research interests, aspirations, capacities, priorities and experiences. More and more communities have members with research training. A minority of full-time researchers have positioned themselves wholly within their own communities to keep community priorities at the heart of their research agenda. An even smaller number of academics have built their UBR agendas entirely or primarily upon CBR.
The HIV/AIDS example
In the queer communities of the majority world, scepticism was the predominant discourse about research in the 1970s. Queer women active in the women’s health movement had already identified sexist biases in medical research as a significant barrier to women’s wellness, but often rightly remained focussed on the urgent need to provide accessible and relevant women’s health services. Many queer men, members of a community with a disproportionate number of white collar professionals, saw much of their health issues already well-represented in mainstream biomedical research – or could draw upon queer professional networks to access queer-sensitive care in areas such as sexual health. Between queer women and men two contradictory experiences with the same research enterprise emerged, which revealed stark differences. There seemed little scope for finding common ground. Then, in the early 1980s, HIV/AIDS happened (Weeks, 1991).
The HIV/AIDS epidemic, and the movement that developed in response, is an excellent example of how a community actioned an urgent need for a shift in traditional UBR. In significant ways the diversity of experiences, competencies
and experience in these queer communities created a unique space for a new sort of activism. Many queer women knew how to use social networks to organise actions and demonstrations. Queer men often presumed a sense of agency and entitlement (as men) and were quick to tap into a wealth of professional skill sets, including physicians, public relations, law and finance found in their social network. As these communities developed a cohesive HIV/AIDS movement, they took advantage of this diverse skill set. A pressing priority was to improve access to effective and safe treatments, but in a larger sense, the HIV/AIDS movement sought to ensure that queer men – the community most affected by HIV/AIDS in most Western liberal democracies in the early years of the epidemic – had a strong, critical voice in the directions taken in the HIV/AIDS research agenda. Over more than 20 years of this epidemic, a range of tacks have been used to this end.
Early in the epidemic the most common mechanism for community involvement was through Research Advisory Committees (RACs), which included persons infected and affected by HIV/AIDS as members. RACs advised UBR, facilitated in-community recruitment for studies, and helped disseminate findings to community. However, RACs brought only limited success; by the mid 1980s activists increasingly saw RACs as an ineffective tool if the community wished to substantively change the university-based HIV/AIDS research agenda. Activists began disrupting AIDS research conferences demanding greater participation: today AIDS conferences now have a number of activists on their scientific review committees. From the 1990s onward, activists continued to infiltrate (and reshape) university-based HIV/AIDS. They asserted a desire for a more central role in the UBR process, only to encounter resistance from UBR teams. Most university-based HIV/AIDS researchers were unwilling to allow activists to participate in study design – unwilling, in fact, to make their research development process open or transparent. Many activists saw only one way to get better research questions answered: conduct their own research.
Since the mid 1990s many HIV/AIDS NGOs have had researchers in-house. Often their studies focus on local knowledge, such as research on service outcomes and client experience: these studies are often of great value to those working on the HIV/AIDS front lines. Their findings are usually disseminated as “grey literature”: self-published reports and presentations. Much of this research has been dismissed by university-based researchers for lacking rigour, specifically for not being generalizable. Outside of a handful of journals (including Convergence), getting these research findings into peer-reviewed journals proves near impossible.
Regardless, HIV/AIDS NGOs cannot fully meet their research needs. Sometimes gaps in methodological tool sets, time or resources scarcity, or concerns about remaining at arms length from the constituencies served by AIDS NGOs mean that not all research can be done in-house. Given how problematic the RAC experience proved, new approaches to community and university research collaboration were required.
Six approaches
What I have described so far are a few scenarios where communities and research intersect. On one end is the traditional UBR approach: academics identify questions, design studies, and retain control over every aspect of the research enterprise, publishing their findings in peer-reviewed journals. At the other end is CBR: these same aspects are delivered in-house and findings are more often disseminated as grey literature. UBR that gives a compartmentalised (and, arguably marginal) voice to community via an RAC has been one collaborative approach. But there are others, each of which merits individual consideration.
The following represent a range of community and university research approaches:
- University-based, independent
- University-based, community advised (RAC)
- Community/university partnership
- Community-based, university advised
- Community contracted, university delivered
- Community-based, independent
All but numbers 1 and 2 are forms of community-driven research: research where community voice and interests are integrated into all aspects of the research enterprise. Those italicised (1, 2 and 6) have been discussed in some detail in the previous section; the subsequent three sections each concentrate on one of the remaining three approaches (3, 4 and 5). It is important to note that these approaches exist regardless of research methodologies: they characterise the composition of research approaches, independent of research design. To make any of the collaborative approaches work, activists first need to do their homework and search for academics who understand how to work in partnership with community and with a track record that demonstrates it.
Community/university partnership
In this approach activist and academic researchers develop a study collaboratively, working as equals on research design, applying for funding, collecting and analyzing data, and writing up any findings. Findings are usually reported both in grey literature and in peer-reviewed journals. The university and the NGO equally own the data. Many communities now require their academic colleagues to integrate skills building activities into the research team’s workload to increase community research capacity once the study has been completed.
One challenge for many community/university partnerships is building relationships (Frisby, 2006). This approach is only workable when there is a great deal of trust, respect, empathy and rapport between all members of the research team – things that cannot be created overnight. Too often research teams try to get a partnership study off the ground before their relationship is solid. Though not ideal, sometimes a pressing need for research means that a study needs to get launched even if everyone agrees the relationships are still developing. In such instances, a smaller pilot study can be a good way to ‘test the waters’ for a larger-scale collaboration.
Community-based, university advised
In communities with solid research capacity the ability to conduct research autonomously does not mean that CBR is always the best approach. Activists may still want specific support in terms of study design, data analysis, or writing up. Sometimes activists merely want to solicit feedback from a content expert. An academic could fulfil any – or all – of these needs. But in this approach the academic is not a leader of the research team; in fact, they might not be a part of the team at all. The academic might participate in some team meetings, work with individual activists one-on-one, or both. The academic will not possess any data, nor will they usually be able to publish from it. Depending on resources, an NGO might offer an honorarium to the academic, but often no monies are available: this is, in effect, pro bono work. However offering this sort of support enhances the credibility of any academic’s ostensive commitment to supporting CBR. Future opportunities – for partnership research or assistance in recruiting participants for the academic’s own UBR – often follow.
This approach clearly puts the NGO and activists in control, something many academics might find unfamiliar or uncomfortable. It can be difficult for many academics to stay within the bounds of a rather narrowly defined role: academics are rewarded for taking the lead. Activists might find it difficult to remember that their academic colleague is an advisor and not a team leader: entitled to respect rather than deference.
Community contracted, university delivered
Many are surprised to hear of NGOs hiring academics as contract researchers, but it is something that is increasingly common. An NGO needs a specific research project conducted quickly and efficiently and might not have the capacity to coordinate the research project itself, and the NGO might not see it worthwhile to train staff to deliver it. Instead they hire a research professional to conduct the research. Academics are an obvious source for such a skill set.
The NGO retains ownership of the data, any findings, and their dissemination. If negotiated in advance, the academic may be able to publish from the data, but this is not a requirement: unlike other collaborative models, the academic is already being compensated for their time in that they are being paid. This approach is another opportunity for activists and academics to try one another out – and it too can lead to subsequent research collaborations. NGO staff may need to provide a fair amount of support to the academic, but should be sure that the person paid to do the research does it: collaborative creep happens when good intentions lead to stakeholders taking on the work of others. But to play a supporting role does not require being servile. For these collaborations to be effective, mutualrespect is a must.
Making it work
The ever-expanding body of “community based research” in the academy represents little research genuinely owned by community. So long as UBR continues to produce the lion’s share of research output, it is the university that must re-orient itself towards more community-centric practices for them to gain currency, otherwise community interests will remain marginal to university research endeavours, and community interest in working with university-based researchers will wane.